Yesterday during my physical therapy appointment, I told my PT about a dilemma I am having with Social Security. Last week, I received a notice saying that I had supposedly received more than $1,000, except the money was nowhere to be found. “If it makes you feel better, I didn’t receive $1,000 either,” he replied.
We laughed because, for a moment, the absurdity of it was funny. Just a few days earlier, on Monday, I had gone to Tufts Medical Center for Botox injections to help manage my spasticity. During physical therapy, the contrast was hard to ignore. When my muscles become tight, there are things I can do to help relieve some of the discomfort. There are treatments to try and people who can help me figure out what might work.
Sometimes the unseen parts of living with a disability are harder to explain than the physical ones. Spasticity is part of my life. I use both a walker and a power wheelchair. Those are some of the most visible aspects of my life with cerebral palsy, but they have never been the whole story.
The physical symptoms of cerebral palsy have never been easy, but they come with something the bureaucratic parts don’t: possible solutions. When my spasticity increases, there are physical therapy sessions, medications, Botox injections, and other treatments that can help me feel better. They don’t make cerebral palsy disappear, but there is reassurance in knowing there is something I can do.
Other problems don’t come with a treatment plan. I can’t go to a doctor and get a prescription to fix a problem with Social Security. Botox injections don’t help me with insurance appeals. Physical therapy appointments don’t change government policies.
I have learned to adapt to many things in my life. Systemic barriers require a different kind of problem-solving. There is far less certainty about whether anything I do will actually help solve the problem.
When something goes wrong with a system or an agency, I am responsible for figuring out what happened, reading paperwork, and advocating for myself while still finding enough energy for everything else. I have become well-versed in navigating these systems because I’ve had to be. Experience has made me better at dealing with bureaucracy, but it hasn’t made bureaucracy any easier to deal with.
Sometimes I wish the hardest parts of disability were the ones people could see. There is comfort in knowing that when my muscles become tight, there is usually something that can be done to help me feel better. It is much harder when housing, independence, or financial stability can depend on saving the right letter, understanding the right paperwork, or reaching the right person by phone.
Sometimes the bureaucracy exhausts me more than the physical symptoms of cerebral palsy But every confusing notice, phone call, and bureaucratic hurdle exists alongside the rest of my life. I still have dreams, places I want to go, and people who care about me.